I run for Sam! NYC marathon 2021

I run for Sam!

Sam is my friend and he is living with a rare disease. My goal is to bring awareness to Sam's disease and help to fund the research program that can eventually stop the progression of his condition, Vanishing White Matter Disease.

Vanishing White Matter disease (VWM) is a very rare neurological condition that destroys myelin, the brain’s white matter. In doing so, it permanently affects transmission of brain signals to the rest of the body. VWM primarily affects children and is untreatable, incurable and terminal.

In 2016, the VWM Families Foundation was formed to raise awareness of VWM, to raise money for research and to support families living with VWM within the United States and worldwide.

The VWM Families Foundation has an ambitious goal of raising $2 million over the next year. This money will fund two promising research projects and support families with necessary medical expenses not covered by insurance. We are so grateful for all the efforts and contributions to date and know with your help we will reach our goal.

Want to join me in making a difference? I'm raising money to benefit National Organization for Rare Disorders Inc, and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to me.

More information about National Organization for Rare Disorders Inc: NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.